Washington, D.C. -
05/21/2008 - President Bush today signed into law the Genetic Information Nondiscrimination Act of 2008 (GINA), providing vital protection for Americans against the misuse of genetic test results by heath insurers and employers.
“Americans have been waiting a long time for this bill, but the wait has been worth it,” said Center Director Kathy Hudson. “Our challenge now is to make sure that doctors and patients are aware of these new protections so that fear of discrimination never again stands in the way of a decision to take a potentially life-saving genetic test.” The Center has compiled a table showing what GINA does and does not do.
Until now, individuals’ genetic information has been protected only by a largely untested patchwork of state and federal regulations. According to a poll conducted last year by the Center, 92 percent of Americans are concerned that results of a genetic test could be used in ways that are harmful to them. GINA’s passage should allay public fears of genetic discrimination, allowing individuals to take advantage of the genetic tests that are now clinically available for approximately 1500 diseases.
GINA prevents health insurers from denying coverage, adjusting premiums on the basis of genetic information, or requesting that an individual undergo a genetic test. Similarly, employers are prohibited from using genetic information to make hiring, firing, or promotion decisions. The law also sharply limits an employer’s right to request, require, or purchase an employee’s genetic information.
The law helps reassure patients who could benefit from genetic testing but have forgone it out of concern over possible repercussions. When people opt not to be tested, they lose the opportunity to seek monitoring and preventive care. Passage of GINA means that Americans will no longer have to make trade-offs between genetic privacy and appropriate health care.
GINA will benefit genetic research as well as individuals. Linking gene variants to health outcomes often requires studies involving large numbers of people, but scientists report that potential subjects have been deterred by the fear that their information could be used against them by employers and insurers. Now, however, scientists will be able to assure study participants that neither their participation in a research study nor their genetic information can be legally used against them by their employers or health insurers.
Pew is no longer active in this line of work, but for more information, visit the Genetics & Public Policy Center Web site or visit the Genetics and Public Policy Centeron PewHealth.org.